Retelling one’s life story—how narratives improve quality of life in chronic language impairment

2018 ◽  
pp. 89-103 ◽  
Author(s):  
Sabine Corsten ◽  
Friedericke Hardering
Keyword(s):  
Quality Of Life ◽  
Social Participation ◽  
Language Impairment ◽  
Life Story ◽  
Language Disorder ◽  
Sense Of Self ◽  
Narrative Approach ◽  
Identity Renegotiation ◽  
Story Work

Recent research in the field of narrative-based medicine has investigated the effectiveness of using illness narratives to stimulate coping processes. This chapter examines the utilization of the narrative approach in treating persons with aphasia—a neurological language disorder—many of whom experience reduced social participation and a change in identity. Although life-story work can support processes of sense-making, only a few studies use a biographic–narrative approach in aphasic patients due to their impaired language abilities. The chapter describes an adapted biographic-narrative intervention developed to assist with identity renegotiation and social participation. In order to show the benefits associated with the intervention and how the participants’ sense of self changed through the approach, the chapter examines a study with 27 aphasic people. It covers how the findings provide foundations for future work using biographic–narrative interventions to influence quality of life and identity renegotiation in people with chronic diseases.

Anxiety and Coping Based on Emotions may contribute to Reduced Quality of Life in Patients with Mild Systolic Heart Failure

2018 ◽  
pp. 1-6
Keyword(s):  
Quality Of Life ◽  
Heart Failure ◽  
Self Efficacy ◽  
Sense Of Self ◽  
Coping Styles ◽  
Nyha Class ◽  
Systolic Heart Failure ◽  
Emotional Dimension ◽  
And Coping

Aims and Scope: Perception of health related quality of life (QoL) may result from the complex interplay between the severity of the disease and the patient’s psyche. It the present study we assumed that anxiety and coping based on emotions may contribute to reduced QoL in patients with mild systolic heart failure (HF). Methods: We examined mainly males with systolic HF (almost all with ischemic etiology of HF, all classified in the NYHA class II, receiving standard pharmacological treatment). Each patient underwent a physical examination, routine laboratory tests and standard transthoracic echocardiography and completed psychological questionnaires assessing: coping styles, sense of self efficacy, acceptance of illness, optimism and the level of anxiety and QoL (by Minnesota Living with Heart Failure Questionnaire). Results: Emotion-oriented coping was strongly positively related to an overall score reflecting QoL (r=0.37) as well as to both dimensions of QoL, with exceptionally high correlation with the emotional dimension (r=0.24 and r=0.62, respectively, all p<0.05). More reduced QoL (overall score as well as scores in both analysed dimensions) was significantly (all p<0.05) but weakly (r=-0.21, r=-0.20 and r=-0.26, respectively) related to lower acceptance of the illness. Higher level of anxiety was related to more reduced QoL (all p<0.05). Reduced QoL in emotional dimension was related to the tendency to avoidance-oriented coping (r=0.26, including also a sub style based on distraction, r=0.34) as well as to lower sense of self-efficacy (r=-0.20) and lower level of optimism (r=-0.20, all p<0.05). Conclusion: The results indicate that HF patients are psychologically diverse, which is not related to disease severity. However, QoL was related to emotion-oriented coping and anxiety. Psychological support for patients with HF should be focused on teaching adequate methods of coping and reducing anxiety.

How Social Participation Benefits the Chronically Ill: Self-Management as a Mediating Pathway

2018 ◽  
Vol 31 (7) ◽  
pp. 1134-1154 ◽  
Author(s):  
Shannon Ang
Keyword(s):  
Quality Of Life ◽  
Social Participation ◽  
Low Income ◽  
Chronically Ill ◽  
Self Management ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Causal Mediation Analysis

Objective: Few studies have tested the purported causal mechanisms between social participation and health, especially among those in poor health. This study aimed to determine whether self-management of chronic disease operates as a pathway through which social participation affects health-related quality of life. Method: I utilized causal mediation analysis among 600 low-income older Singaporeans living with chronic conditions, to test whether self-management mediates the association between social participation and health-related quality of life. Results: Results show that self-management fully mediated the positive effect of informal social participation on health-related quality of life. Formal social participation was found to have a negative direct effect on health-related quality of life. Discussion: These findings reiterate the primacy of family and friends for older adults, but highlight that a better understanding of formal engagement with the low-income population is still needed.

scholarly journals Quality of Life in Physical, Social, and Cognitive Domains Improves With Endovascular Therapy in the DEFUSE 3 Trial

Stroke ◽  
2021 ◽  
Author(s):  
Laura C. Polding ◽  
William J. Tate ◽  
Michael Mlynash ◽  
Michael P. Marks ◽  
Jeremy J. Heit ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Ischemic Stroke ◽  
Medical Therapy ◽  
Social Participation ◽  
Endovascular Therapy ◽  
Neurological Disorders ◽  
Measurement Tool ◽  
Modified Rankin Scale ◽  
Standard Medical Therapy

Background and Purpose: The DEFUSE 3 (Endovascular Therapy Following Imaging Evaluation for Ischemic Stroke 3) randomized clinical trial demonstrated the efficacy of endovascular therapy in treating ischemic stroke 6 to 16 hours after onset, resulting in better functional outcomes than standard medical therapy alone. The objective of this secondary analysis is to analyze the effect of late-window endovascular treatment of ischemic stroke on quality of life (QoL) outcomes. Methods: Patients (n=182) who presented between 6 and 16 hours after they were last known to be well with acute anterior circulation ischemic stroke were randomized to endovascular thrombectomy plus standard medical therapy or standard medical therapy alone and followed-up through 90 days poststroke. QoL at day 90 was assessed with the QoL in Neurological Disorders measurement tool. Results: Of the 146 subjects alive at day 90, 136 (95%) filled out QoL in Neurological Disorders short forms. Patients treated with endovascular therapy had better QoL scores in each domain: mobility, social participation, cognitive function, and depression ( P <0.01 for all). Variables other than endovascular therapy that were independently associated with better QoL included lower baseline National Institutes of Health Stroke Scale, younger age, and male sex. The degree to which the modified Rankin Scale captures differences in QoL between patients varied by domain; the modified Rankin Scale score accounted for a high proportion of the variability in mobility (Rs 2 =0.82), a moderate proportion in social participation (Rs 2 =0.62), and a low proportion in cognition (Rs 2 =0.31) and depression (Rs 2 =0.19). Conclusions: Patients treated with endovascular therapy 6 to 16 hours after stroke have better QoL than patients treated with medical therapy alone, including better mobility, more social participation, superior cognition, and less depression. The modified Rankin Scale fails to capture patients’ outcomes in cognition and depression, which should therefore be assessed with dedicated QoL tools. REGISTRATION: URL: https://www.clinicaltrials.gov . Unique identifier: NCT02586415.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

scholarly journals Health-Related Quality of Life of Adults with Childhood Diagnosis of Specific Language Impairment

2008 ◽  
Vol 60 (5) ◽  
pp. 233-240 ◽  
Author(s):  
E. Arkkila ◽  
P. R&auml;s&auml;nen ◽  
R.P. Roine ◽  
H. Sintonen ◽  
E. Vilkman
Keyword(s):  
Quality Of Life ◽  
Language Impairment ◽  
Specific Language Impairment ◽  
Health Related Quality ◽  
Specific Language ◽  
Related Quality ◽  
Health Related

scholarly journals Addiction Recovery Among Opioid-Dependent Patients Treated With Injectable Subcutaneous Depot Buprenorphine: Study Protocol of a Non-randomized Prospective Observational Study (ARIDE)

2020 ◽  
Vol 11 ◽  
Author(s):  
Bernd Schulte ◽  
Kirsten Lehmann ◽  
Christiane Sybille Schmidt ◽  
Elke Rühling ◽  
Bernd Weber ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Observational Study ◽  
Study Protocol ◽  
Social Participation ◽  
Prospective Observational Study ◽  
Substitution Treatment ◽  
Addiction Recovery ◽  
Opioid Substitution Treatment ◽  
Opioid Substitution

Introduction: Once-weekly or once-monthly injectable depot buprenorphine is a new opioid substitution treatment (OST) medication that provides clinically relevant plasma concentrations without daily peaks. Together with a high tolerability and acceptance reported by patients, the prolonged release of injectable depot buprenorphine might have beneficial implications on the patients' quality of life and social participation. The primary objective of this prospective non-interventional observational study is to evaluate the effects of subcutaneous injectable depot buprenorphine on the quality of life of patients in routine OST care in Germany. Secondary outcomes like illicit substance use, psychological distress, social participation and activity are assessed to provide an overall evaluation toward addiction recovery.Methods and Analysis: The present study is a non-randomized prospective observational study with a control group (treatment-as-usual). To ensure comparability between both patient groups, suitable control patients (n = 213) from the same OST unit will be matched pairwise to each patient treated with injectable depot buprenorphine (n = 213). Matching variables are gender, duration of OST, take-home prescription and psychosocial functioning (according to the Global Assessment of Functioning scale). Primary study endpoint is the difference of change in quality of life, assessed with the recently developed Opioid Substitution Treatment Quality of Life scale (OSTQOL), within the depot buprenorphine group between baseline and month 12. The primary analysis will be carried out according to the intention-to-treat principle (ITT) by comparing OSTQOL mean scores using dependent t-tests. For secondary analyses, group comparisons will be done by mixed model approaches with baseline OSTQOL score and the (pairwise) cluster term as covariates.Discussion: The study combines clinical, routine OST care data with relevant patient reported outcome data. The pairwise matching allows conclusions on effects of different OST medications. The study findings will provide new insights in the addiction recovery processes of OST patients treated with depot buprenorphine.Ethics and Dissemination: The study protocol has been approved by the Ethics Committee of the Hamburg Chamber of Physicians (Ärztekammer Hamburg) (reference number: PV7078). The study results will be disseminated through peer-reviewed publications and presentations on scientific conferences.Clinical Trial Registration: German Clinical Trials Register DRKS-ID: DRKS00020797

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